Bring Back Aspie

The issue to my mind is services for aspies / high functioning autistic people look quite different to services for low functioning autistic people. It is useful to have a separate term because the services for each needs to be set up and run differently with an emphasis on different needs.

As it is the one size fits all terminology hides the fact that people with 'Aspergers' type autism are not being well served and having their needs met. It also makes the services that are set up for them harder to find.

Low functioning needs / issues: Issues with mental capacity and issues with independent living, accessing healthcare and welfare services.

High functioning autism needs issues: Issues with social isolation, discrimination (especially in the workplace / education). exclusion from education / labour market unrelated to ability.

Peter said:

Low functioning needs / issues: Issues with mental capacity and issues with independent living, accessing healthcare and welfare services.

High functioning autism needs issues: Issues with social isolation, discrimination (especially in the workplace / education). exclusion from education / labour market unrelated to ability.

 But I have "HFA" but my needs are also "low funtioning" needs. Where do I turn if those support services get split in half and people doing triage only read "HFA" on a decades out of date document? That's a problem, because I'm not the only one in that boat either.
Because if my reality isn't that I'm always or mostly "High functioning" then having "HFA" is just a meaningless wild stab in the dark made by some shrink with a clipboard and outdated notions of what autism is back when it was thought that it was caused by vaccines.
What would you propose to remedy that issue for those who would fall through the gaps?

You just described a form of existential and logistical crisis I've been in most of my life lol. I'm never quite "X enough" my life has been a seemingly never ending series of falling through the cracks. Anyway I must go sleep pretty soon my brain feels like it is turning into a pumkin.

Well, the difference here is that I want one car that fits my needs and it's one that has some features of the mini and others of the sport. As in some areas I excel and in others I fail terribly (as talking for example). Added to this requirement, is that I, myself, am not sure exactly what my car specific requirements are and I require a specialist to guide me find my needs. I think this represents the case for many autistic people, we can't be put in a box and our needs are very different, person to person. I can't find all what I need in either the sport or the mini.. where should I go?! How do I define exactly my weaknesses and strengths and my specific needs without the help of a specialist who specialises in both of them? Why should I stick to one box or another while what I need is in between?!

I had actually thought of that before, and this is where overlaps may come back into it because we can't be the only ones with issues of isolation, and actually a lot of things that affect autists also affect people with ADHD, etc, hopefully You see where I am going with this and I won't need to make a full list. haha. So what if it wasn't only Autism specifc but opened it's doors to various kinds of neurodivergent folks? That would be okay by me, more people to get to know and hopefully find friends in. Anyway something for the next thread on it. Maybe we shuld copy paste a few points from this discussion to save us all typing things out quite so much if we need to refer back to this chat.

As I said I’d happily settle for a Portakabin on an industrial estate provided it had good transport links. But autism charities just do not see this sort of thing as a priority.

By all means let’s have a thread another time but I’ve already thought this through to some degree. An endeavour like this needs at least one full-time employee. Someone who can turn up with the keys to let people in and out of the building. If you can only do it when volunteers have spare time you won’t really be using the building enough to justify having a building.

also a thing about having a service like this is it’s geographically locked. it’s very difficult for people to be involved unless they are in geographic proximity and on this forum we are scattered all over the place. I for my part I am Yorkshire based. It will be difficult for me to collaborate on a project like this with anyone who wasn’t in the Yorkshire region. Simply because if activity is based around a physical place it’s difficult for people to be involved if they can’t easily get to that physical place.

Yeah, unfortunately it is. The SU is one of the biggest unions in the country, it's made up of smaller unions for most universities and colleges. Apparently it has over 7 million members. Plus most of the venues are owned by the universities and colleges, not the NUS, they have agreements in place to use them but they don't own them for the most part. Even if all the autistic people in the country joined we'd be smaller than that by a factor of 10, and realistically the number of people joining would be much smaller than that. Anything set up now would take years to get to the stage they're at, if it ever got that big.

Perhaps at a more social hour one of us should make another thread and see who on this forum would be A interested and B capable of making a start up for something like this for autistic adults and then see if anyone from NAS would be interested in helping with some logistics to create the service.
I mean we are in their forums, why not take the idea to one of their higher-ups?

Again I’m going to point out student unions do exactly that. They have venues all around the country, which they make available to students to organise their own events in, either for free or at highly subsidised prices. Lots of charities own or lease their own building. and average student union is a massive sprawling complex of rooms and Cafes and restaurants and nightclubs. Is it really so unrealistic  that an autistic  charity could afford a Portakabin.

Charities have to hire venues too, or were you suggesting they would have multiple locations around the country purely to host events? That would take a massive amount of funding, which this just doesn't warrant.

Perhaps I wasn't very clear, I wasn't talking about having the events online, just the organising and the social aspects in-between meet ups. Frankly it sounds like you want a charity to organise lots of different clubs, I would say that is something that people sharing similar interests should organise themselves, just like anyone else with shared interests. If there isn't already a club for what you are interested in then set one up and advertise it on here and on the various Facebook groups, see what happens.

What we need is something like a student union but for autistic people. An umbrella organisation for our activities and interests and also an advocacy and advice service for us when we are discriminated against.

well You are at it something like a careers advice service specific to autistic people would not go amiss either. Because frankly I don’t think the average autistic employment charity it’s going to do a very good job of helping me tailor my CV to getting a postdoctoral research position

Indeed but venue access is an issue. As I’ve said before the principal thing an autism charity could provide for autistic people who want to socialise around a special interest is the venue. A lot of public library space is not available after 5 o’clock after working hours. My local council charges a premium fee for evening access to their function rooms. And the fees are not that affordable for someone like me who currently does not have a job. Think you were looking at something like 40 £50 a night or something like that for a 10 person room. Which means something like charging a fiver each. It’s difficult to get people on board something new for those sorts of prices.

Maybe this should be it's own thread, however....
... Do you recall after school clubs? It's occured to me that what you are reffering to isn't really a support service (in the traditional sense of the phrase) for "HFA" folks, what you are refferring to is the need for a social club run by and or for Autistic adults, so that perhaps is a thing that could be run out of community centres and public libraries if groups could be formed and ruun it by bringing their own equipment. You know a lot of community projects are grassroots until they get charity staus and/or  get picked up by other agencies wanting to be involved or provide funding.
Yeah ideally we wouldn't be the ones to have to run and fund it ourselves, but in light of no alternative have you thought about seeing wh would be willing to let you set one up yourself in the meantime?

Oh but it would, because the principal problem is most of these things do not work as online events believe me I have tried. And the principle thing thaT a charity would bring to this sort of endeavour would be the physical venue. That and a network of contacts, email addresses, PR materials, newsletters.

Could that not be something these sort of discussions could be used for? Having different chat threads for different special interests where meet ups could be organised? Maybe a Discord server with different rooms, there's bound to be someone who could set that up. I don't think a charity to organise social gatherings would be that different from doing it ourselves.

Sadly I don’t see NHS mental health services giving us a room to watch anime in. Or to play video games in for that matter. Or a cat walk to run a Goth /cosplay fashion show on. Or a series of empty corridors to turn into an obstacle course for a Nerf / water balloon battle. Or a restaurant in which to run a maid café for a day.

Peter said:

I’m not making any assumptions about what you can or can’t do. Well certainly not things like driving. But I do not see why because you require services that pertain to requiring care and Assistance with daily living people like me cannot have terminology that indicates we still have needs, for example social needs, even though we do not struggle with those sorts of things.

But I'm not stopping you from using terms you prefer to refer to yourself, I'm not the label police, I'm just explaining my it is separatism and not the best practice.

Peter said:

I tried to say in a post but seems to have been deleted or lost.

I wondered what that was, I went to check a reply notification but as I loaded into the page it said whatever it was was unavailable and under review. Spam filter must have eaten it, don't worry it got 2 of my posts earlier too.

Peter said:

The services I would wish for do not exist. because the services I would wish for are mostly specific to autistic people for whom the most natural forum for socialisation is their own special interests.

Well I want that service too, (for fun maybe make a list of your iterests and I'll tell you what workshops you'd meet me in where we share an interest) I just don't see why they need to be held "somewhere else" or with different people. In fact if the NHS was better funded overall we probably would have it as a sideline of Mental Health services anyway. So it's not missing because "HFA/aspergers" have fallen out of use it's because of the lack of funding.

And the reason the services I would wish for do not exist is in part because there is no terminology to describe autistic people ffor whom the greatest needs relate to communication and social isolation. Asperger’s was the closest thing to a term for that we had.

The lack of Asperger’s specific charities is why issues like social isolation of people who would wish to engage on the lines of their special interests can be written off as a niche issue.

I’m not making any assumptions about what you can or can’t do. Well certainly not things like driving. But I do not see why because you require services that pertain to requiring care and Assistance with daily living people like me cannot have terminology that indicates we still have needs, for example social needs, even though we do not struggle with those sorts of things.

as I tried to say in a post but seems to have been deleted or lost. The services I would wish for do not exist. because the services I would wish for are mostly specific to autistic people for whom the most natural forum for socialisation is their own special interests. And providing social interaction for autistic people that revolves around special interests is considered a niche case by most autistic charities.

Peter said:

I don’t think there’s anything elitist about saying that you are intelligent and able to go to the shops or drive a car

Not there's not, and I can do those too , just not for very long periods of time, but that's just because I'm lucky enough not to need support for those things specifically. I look high functioning on the surface level but in reality it's a neverending cycle of maintenance that requires a carer in other areas of my life.  Yeah I'm not the worst functioning autist and my ability to use my thesaurus brain here on the forums might make me look competent but the label based artirarily on my IQ fails me, because if it weren't for the people I have in my life that I do, I wouldn't function even half so well as I do now, and I don't consider myself to function highly at all, that implies I can live alone, which I can't. But "back in the day" my original diagnosis seems to have been the same as yours.
If we look very similar "on paper" at least why would you not want to be in the same category as me? Did you think that I couldn't drive or go to the shops just because I also need a carer or someone with me for support sometimes? That's why it is elitist. It's all the presumtions based on these false functioning labels, they are really harmful becase there is no spectrum under "HFA/Aspergers" to account for the areas where I need the extra support. But if people would just accpet that Autism is a spectrum and it isn't fixed then we are all included and thought of.

Peter said:

I don’t think there’s anything elitist about saying that you are intelligent and able to go to the shops or drive a car

Not there's not, and I can do those too , just not for very long periods of time, but that's just because I'm lucky enough not to need support for those things specifically. I look high functioning on the surface level but in reality it's a neverending cycle of maintenance that requires a carer in other areas of my life.  Yeah I'm not the worst functioning autist and my ability to use my thesaurus brain here on the forums might make me look competent but the label based artirarily on my IQ fails me, because if it weren't for the people I have in my life that I do, I wouldn't function even half so well as I do now, and I don't consider myself to function highly at all, that implies I can live alone, which I can't. But "back in the day" my original diagnosis seems to have been the same as yours.
If we look very similar "on paper" at least why would you not want to be in the same category as me? Did you think that I couldn't drive or go to the shops just because I also need a carer or someone with me for support sometimes? That's why it is elitist. It's all the presumtions based on these false functioning labels, they are really harmful becase there is no spectrum under "HFA/Aspergers" to account for the areas where I need the extra support. But if people would just accpet that Autism is a spectrum and it isn't fixed then we are all included and thought of.

I had actually thought of that before, and this is where overlaps may come back into it because we can't be the only ones with issues of isolation, and actually a lot of things that affect autists also affect people with ADHD, etc, hopefully You see where I am going with this and I won't need to make a full list. haha. So what if it wasn't only Autism specifc but opened it's doors to various kinds of neurodivergent folks? That would be okay by me, more people to get to know and hopefully find friends in. Anyway something for the next thread on it. Maybe we shuld copy paste a few points from this discussion to save us all typing things out quite so much if we need to refer back to this chat.

As I said I’d happily settle for a Portakabin on an industrial estate provided it had good transport links. But autism charities just do not see this sort of thing as a priority.

By all means let’s have a thread another time but I’ve already thought this through to some degree. An endeavour like this needs at least one full-time employee. Someone who can turn up with the keys to let people in and out of the building. If you can only do it when volunteers have spare time you won’t really be using the building enough to justify having a building.

also a thing about having a service like this is it’s geographically locked. it’s very difficult for people to be involved unless they are in geographic proximity and on this forum we are scattered all over the place. I for my part I am Yorkshire based. It will be difficult for me to collaborate on a project like this with anyone who wasn’t in the Yorkshire region. Simply because if activity is based around a physical place it’s difficult for people to be involved if they can’t easily get to that physical place.

Yeah, unfortunately it is. The SU is one of the biggest unions in the country, it's made up of smaller unions for most universities and colleges. Apparently it has over 7 million members. Plus most of the venues are owned by the universities and colleges, not the NUS, they have agreements in place to use them but they don't own them for the most part. Even if all the autistic people in the country joined we'd be smaller than that by a factor of 10, and realistically the number of people joining would be much smaller than that. Anything set up now would take years to get to the stage they're at, if it ever got that big.

Perhaps at a more social hour one of us should make another thread and see who on this forum would be A interested and B capable of making a start up for something like this for autistic adults and then see if anyone from NAS would be interested in helping with some logistics to create the service.
I mean we are in their forums, why not take the idea to one of their higher-ups?

Again I’m going to point out student unions do exactly that. They have venues all around the country, which they make available to students to organise their own events in, either for free or at highly subsidised prices. Lots of charities own or lease their own building. and average student union is a massive sprawling complex of rooms and Cafes and restaurants and nightclubs. Is it really so unrealistic  that an autistic  charity could afford a Portakabin.

Charities have to hire venues too, or were you suggesting they would have multiple locations around the country purely to host events? That would take a massive amount of funding, which this just doesn't warrant.

Perhaps I wasn't very clear, I wasn't talking about having the events online, just the organising and the social aspects in-between meet ups. Frankly it sounds like you want a charity to organise lots of different clubs, I would say that is something that people sharing similar interests should organise themselves, just like anyone else with shared interests. If there isn't already a club for what you are interested in then set one up and advertise it on here and on the various Facebook groups, see what happens.

What we need is something like a student union but for autistic people. An umbrella organisation for our activities and interests and also an advocacy and advice service for us when we are discriminated against.

well You are at it something like a careers advice service specific to autistic people would not go amiss either. Because frankly I don’t think the average autistic employment charity it’s going to do a very good job of helping me tailor my CV to getting a postdoctoral research position

Indeed but venue access is an issue. As I’ve said before the principal thing an autism charity could provide for autistic people who want to socialise around a special interest is the venue. A lot of public library space is not available after 5 o’clock after working hours. My local council charges a premium fee for evening access to their function rooms. And the fees are not that affordable for someone like me who currently does not have a job. Think you were looking at something like 40 £50 a night or something like that for a 10 person room. Which means something like charging a fiver each. It’s difficult to get people on board something new for those sorts of prices.

Maybe this should be it's own thread, however....
... Do you recall after school clubs? It's occured to me that what you are reffering to isn't really a support service (in the traditional sense of the phrase) for "HFA" folks, what you are refferring to is the need for a social club run by and or for Autistic adults, so that perhaps is a thing that could be run out of community centres and public libraries if groups could be formed and ruun it by bringing their own equipment. You know a lot of community projects are grassroots until they get charity staus and/or  get picked up by other agencies wanting to be involved or provide funding.
Yeah ideally we wouldn't be the ones to have to run and fund it ourselves, but in light of no alternative have you thought about seeing wh would be willing to let you set one up yourself in the meantime?

Oh but it would, because the principal problem is most of these things do not work as online events believe me I have tried. And the principle thing thaT a charity would bring to this sort of endeavour would be the physical venue. That and a network of contacts, email addresses, PR materials, newsletters.

Could that not be something these sort of discussions could be used for? Having different chat threads for different special interests where meet ups could be organised? Maybe a Discord server with different rooms, there's bound to be someone who could set that up. I don't think a charity to organise social gatherings would be that different from doing it ourselves.

Sadly I don’t see NHS mental health services giving us a room to watch anime in. Or to play video games in for that matter. Or a cat walk to run a Goth /cosplay fashion show on. Or a series of empty corridors to turn into an obstacle course for a Nerf / water balloon battle. Or a restaurant in which to run a maid café for a day.

Peter said:

I’m not making any assumptions about what you can or can’t do. Well certainly not things like driving. But I do not see why because you require services that pertain to requiring care and Assistance with daily living people like me cannot have terminology that indicates we still have needs, for example social needs, even though we do not struggle with those sorts of things.

But I'm not stopping you from using terms you prefer to refer to yourself, I'm not the label police, I'm just explaining my it is separatism and not the best practice.

Peter said:

I tried to say in a post but seems to have been deleted or lost.

I wondered what that was, I went to check a reply notification but as I loaded into the page it said whatever it was was unavailable and under review. Spam filter must have eaten it, don't worry it got 2 of my posts earlier too.

Peter said:

The services I would wish for do not exist. because the services I would wish for are mostly specific to autistic people for whom the most natural forum for socialisation is their own special interests.

Well I want that service too, (for fun maybe make a list of your iterests and I'll tell you what workshops you'd meet me in where we share an interest) I just don't see why they need to be held "somewhere else" or with different people. In fact if the NHS was better funded overall we probably would have it as a sideline of Mental Health services anyway. So it's not missing because "HFA/aspergers" have fallen out of use it's because of the lack of funding.

And the reason the services I would wish for do not exist is in part because there is no terminology to describe autistic people ffor whom the greatest needs relate to communication and social isolation. Asperger’s was the closest thing to a term for that we had.

The lack of Asperger’s specific charities is why issues like social isolation of people who would wish to engage on the lines of their special interests can be written off as a niche issue.

I’m not making any assumptions about what you can or can’t do. Well certainly not things like driving. But I do not see why because you require services that pertain to requiring care and Assistance with daily living people like me cannot have terminology that indicates we still have needs, for example social needs, even though we do not struggle with those sorts of things.

as I tried to say in a post but seems to have been deleted or lost. The services I would wish for do not exist. because the services I would wish for are mostly specific to autistic people for whom the most natural forum for socialisation is their own special interests. And providing social interaction for autistic people that revolves around special interests is considered a niche case by most autistic charities.